Above: Ready for Hamilton in Chicago
I apologize to those who started reading my blog a few days ago. It was not intended to be posted. But here is the real deal…
I felt a drip and then another. Cerebrospinal Spinal Fluid (CSF, or what the brain is suspended in) was dripping from my head to my shirt. This is a shocking experience to say the least. But first to Surgery 1.
We (Staci, my mom and dad) drove down to Ann Arbor the night before surgery. We stopped at Shalimar for one last good meal. After midnight I would be NPO, so I figured I could enjoy one last cup of coffee, take one more shower, and then go dark for the rest of the day.
While we were waiting for the anesthesiologist, a sweet nurse walked up and started talking to us. She introduced herself, but her name didn’t register with me. She seemed nice and knew me, so we chatted for bit. At some point in the conversation Staci picked up on the fact that her daughter was a Waves swim coach and the light bulb went on. It was coach Anna’s mom. Regardless, it is always nice to have a good distraction before surgery.
My neurosurgical team whisked me away in early hours of 07/24/18. That’s a third time redo for those counting at home. While the anesthesiologist were putting me to sleep, my latest surgeon walked in.
“You probably will not remember this…” said Dr. Heth.
But that is the last thing I do remember.
I had an MRI intraoperatively and at the end of the surgery. Then, I had another MRI in the middle of the night. Neurosurgeons love their MRIs.
Staci was first to come back to the recovery area and it was then that I was told 9 hours had passed. That was a long time. Staci said everything was fine, so I believed her. I guess that’s what you get after a 3rd time redo. The doctor said that the long surgery was mostly due to going in and out of the MRI machine.
Dr. Heth: “Did any of your previous surgeons mention the difficulty in putting your head back together?”
Me: “Hm, no, but do tell.”
Heth: “Your skin on your head is very thin and it was very hard to stitch together.”
Me: “Hmm, note taken.”
Some leakage around the edges, and a small, waterbed sensation under your skin that is palpable. I even asked my second surgeon, Dr. Matt Tate, and he agreed with the current management. Just wait it out and wrap it at night. I wrapped my head nightly despite my odd appearance. Despite my best efforts, I couldn’t lean too far forward. I couldn’t exercise. My recovery was at first pretty uneventful, than you could say almost positive, and then very negative.
My pathology showed a mix of glial cells, inflammatory debris, and recurrent glioblastoma multiforme. However, I did get into the treatment arm of the Tocagen Trial. This is a 50 / 50 randomized controlled trial, so exactly 50% make the treatment arm and 50% are in the placebo (you know once you wake up). My mother was convinced if she was really nice, someone would find the heart to put me in the treatment arm. Well mom, you were nice enough to somebody!
The treatment arm starts in the operating room. After the resection, your cavity is injected with Toca 5. After 6 weeks post op, you get a repeat scan and plan for chemotherapy. This involves Toca 511 and Toca FC. Yeah, I do not really understand it either, and I am a doctor. I’ll just stop there part 1. I was ready to start my oral therapy on Wednesday, September 5th, but my brain had other plans.
And then Cerebrospinal Spinal Fluid (CSF) started spilling from my brain. I guess my oral therapy is going to have to wait. I was typing this blog, and I felt clear liquid fall all over my chest. Well, that can only be CSF! It stopped eventually, but persisted long enough to be clearly apparent. Staci walked in the door from MVP and asked how I was doing? I guess I was somewhat confused because my response was, “ok.” As she looked up from putting the bagels on the counter (yes, Tuesdays are Panera bagel days after bootcamp). She looked stunned. We settled on calling my PCP, and he called my Neurosurgeon. After a few phone calls, University of Michigan was contacted (indirectly) and admitted (sort of). We had no idea how many nights we would be in Ann Arbor. They recommended I head to the U of M ER.
The ER was quiet when Staci and I arrived. We were quickly guided back to a room and I was hooked up to an EKG (unnecessary). I changed into my gown and waited. Then we waited some more. Just outside our room was a man who was moaning and groaning and throwing up. He did that for 8 hours. Yes, that is how long I sat in my bed waiting for my MRI. They finally took me back for my MRI at 8:30 pm, it was ordered by 12pm. My neurosurgeon took one look at me, however, and decided I needed to be admitted on the spot.
They decided that they would do a lumbar drain on Wednesday night to alleviate the pressure on my head. Staci decided to head home to give her mom a quick break. The procedure went well. When Staci returned on Thursday the first thing I said was that I had a new roommate, but that he was a “good” roommate.
This is where it gets funny. I mean, it was not funny at the time, but funny now.I convinced myself I had a really good roommate. See, at University of Michigan, that’s what you get: A Roommate. This is fine as long as your roommate is good. I have not had one of those, yet. Staci and I awoke to a very loud diarrhea. My roommate did not have control of his bowels. So for the next 12 hours, we listened to the sweet smell of diarrhea. We truly needed the air freshener.
That afternoon they wheeled me out of my room for shunt surgery. My mom, dad, sister Amy and Staci were all in pre-op with me. It was hard to believe I had to go through this again, but I was looking forward to getting back home to my kids. I found out later that it was neuro-oncologist, Priya, from Northwestern. She had read through Facebook that we were at U of M and she was calling to see what was going on.
After surgery, Staci came back to the recovery area again (didn’t I already say that?) . She got me some water and sat with me until the transport team pushed me back to my room and my lovely roommate.
That night Staci gave me a little pep talk. She told me things were looking up. If I felt ok, we would leave the next day. My response, “I don’t care if I feel like shit, I am getting the hell out of here.”
On the final day before discharge, I awoke to hear my roommate say something in the middle of the night. Then he decided to turn on all the lights. This was 4 AM! Are you kidding me? Then at 6AM on a Saturday he started making phone calls. He was determined to get transferred to a rehabilitation center. Or to get a day pass so that he could go the U of M game.
A few headaches, a little nausea. I would try to get up and do something and I just felt like crap. I spend two straight days in bed and I just didn’t improve. My dad finally figured out I likely had a leak from my lumbar drain they had placed at U of M prior to my shunt surgery. “I am 99 percent sure this is what it is CTA. We are going to fix you.” That was 24 hours after my previous pep talk of “get your butt up and move.” After about an hour I saw the anesthesiologist and I got my blood patch. I rested for about an hour and then I was home. No more nausea and my headache had subsided.
Just as I was recovering, I got another hit. I was up early with Staci and decided I would walk on the treadmill while she went to her spin class at The Daily Method. I walked 2 miles, felt funny, and laid down. This was just a partial (yeah, just a ‘partial’) seizure. When she arrived, she said Connor sitting on the floor next to me with his Star Wars guys lined up. He was just entertaining me. He had tucked a pillow under my head and was keeping me company.
Yesterday, my sisters visited. They took me for a haircut, a coffee, and we walked by the lake. Today I had breakfast with Todd at Marie Catribs and Wednesday Staci, my mom and I will head to Ann Arbor and hopefully get started on my oral therapy for the Tocagen Trial. So even amidst the most challenging of days, there is hope. Here’s to hoping that Tocagen will be as good to me as Pembro.
A few photos from the last nine weeks:
Left: Craig and Staci at Shalimar pre-surgery. Upper right, before surgery selfie with Staci. Bottom right: This is what my morning typically looked like…trying to type through the nausea.
Upper left: Tom and Uncle Jim sit and wait while I’m in surgery. Middle: Mom and dad keeping me company. Right: Allison and Sophie at the State Meet at Eastern. Lower left: Relay team of Rotem, Sophie, Allison and Anna. Middle left: Reunited after the first surgery. Middle right and right: The kids at GG and Papas during surgery.
Upper left: Chicago dinner. Middle left: Cindy brings treats, Bradford office sends hands of encouragement, kids first day of school. Middle: Connor wins the Los Lobos soccer league, Cousin fun at skyline and ice cream with friends. Upper right: Mia turns 5, Middle, I take snap in between walking and biking. Middle right: Shakes in Chicago, lower right: John and Connor have fun at Deer Track Junction
Top picture: Staci’s brother, Chad, stops for a visit. Left top: Celebrating September/October birthdays: Anna, Gen, Ella, Grace and Rosalee. Left middle: Ella, Grandpa and Mia race on the EZ roller. Bottom left: Explanation of the Tocagen Trial. Bottom right: Fun at KD’s pool. Middle right: Mia’s artwork
Left: In the ER waiting for an MRI, looking at my EKG, home with Ella, the girls making me comfortable. This was before the blood patch when I only felt decent lying flat. Below: Happy to be home with my kids!
Happy to be with the kids